18 month old daughters MRI results - a lot worse than we thought

I remember your previous thread, and yes would be my worst nightmare, and i'm planning on having 2 kids myself. All I can say is that whatever her problems, it's obvious that she is loved as well as anyone in this world, so despite her problems you can be guaranteed she is going to live as full and as happy a life as any child brought into this world. You will likely suffer a lot more than she will, if you catch my drift. You have my genuine best wishes.

Rich. :)

EDIT - I also remember your previous thread
 
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Awful news to hear, but there are plenty of charities and help organisations that no doubt you will have been put in touch with and they can help you. The TSA is just one of many I'm sure.
 
First of all sorry that things were worse than you exptected, I remember reading your previous thread and hoping things would turn out ok.

If you haven't already, I recommend you read up on the tuberous sclerosis wiki. While there's no miracle cure it seems we're in a much better position to manage the illness than previous generations were.

I think you should consider getting people to sign up to the CommunityTSC dc project. You'd definitley have my spare cycles.

CommunityTSC Drug Design Optimization Lab (D2OL)™ is a distributed computing project developed by the Rothberg Institute For Childhood Diseases to test drug candidates interaction with a target molecule that is essential to the spread of the disease under scrutiny. By evaluating the energy level released by binding a small molecule drug candidate to the surface of a larger Target molecule (D2OL)™ determines the fitness of the particular candidate to a region of the Target structure known as the Active Site. This process is referred to as Docking the drug candidate to the target.

The Rothberg Institute For Childhood Diseases is a non-profit organization dedicated to finding a cure for children suffering from Tuberous Sclerosis Complex (TSC), and operates at the intersection of modern biology, computer science, and chemistry.
Click to expand...
http://en.wikipedia.org/wiki/Community_TSC
http://www.childhooddiseases.org/download.html
 
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Stay strong and don't let it get you down. Doctors can be a bit overzealous with their predictions. Mate of mine had some issues and was'nt expected to pass 5yrs old, had his 31st this Janurary. Mate of my Dad has an inoperable tumor and was given 1yr max, its now 6 yrs later. They don't know everything.
 
the wifes cousin's wee girl has this too. The medication has made a real difference, the fits have pretty much stopped and you really couldn't tell there's anything wrong with her.

Hope it goes as well for you as it is for them.
 
She's adorable. :)

I'm sorry to hear this latest development, I remember your past thread and hoped that all went well. Just remain positive as hard as that seems, all the best to your family for the future.
 
****, hope you and your wife are ok.

We went through lots of tests with our 2nd son, as he has hydrocephalus, which is excessive fluid round the brain and spine. Nothing in the leage of what you must be feeling, but I do understand how you feel. I do hope things get better for you.
edit: started crunching on the laptop for CommunityTSC
 
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This has lost me what does it mean about data crunching and fire machines up :confused:
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sorry mate, should have explained

basically, seti, but for medical cures.

Your PC acts as though its part of a huge supercomputer, decoding and working on data, and sending it back to the person who sent it to you... so basically, in this, your pc can be used to work on running tests on proteins or something to try and find cures.. the more people who run it, the more data that gets processed....
 
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